Exactly who is unresponsive here?

I just watch the horrible public service announcement by Autism Speaks. (I wonder how that girl likes having her mother announce to the entire world that she’s thought of killing her, if you’re wondering why I called it “horrible”.)

One thing that struck me was that the children in the video were described as unresponsive, over and over again. And yet the children were responding to their parents and to their environments in general, and they were doing so in incredibly clear ways.

However, by the way the parents were acting, it might as well not have been happening. They went right on doing whatever it was they had been doing, as if the children were not communicating anything. The body language of the parents did not change in the slightest in response to their children, it stayed constant, and very very socially smooth.

Then, in order to get their children to “respond” to them (as if the children had not been responding already), they’d do things like try to force eye contact. As if eye contact is “connection” and “response”. There was also some grabbing and moving them around, as if they were objects, but without any responsiveness to the reactions of the children. I even saw children being driven into overload and then parents sitting there looking “sad” that their children did all these “behaviors”.

Where is this fabled unresponsiveness?

I see a lot of unresponsive non-autistic people in that video, I see people being, in fact, unresponsive in ways that would strike me as outright cruelty if I thought they knew better. (I don’t think most of them know better.)

But where is this unresponsiveness supposedly existing in the autistic people in the video?

Is it because their faces are not pointed the “correct” direction? (Do you have to be looking at someone to know they are there?)

Is it because they are not talking? (Do you have to talk to respond to people?)

Is it because they are flapping their hands and stuff? (Do you have to move a certain way to respond to people?)

I don’t understand it at all. I look at those children and I see overwhelming, repetitive responsiveness in the face of being totally ignored and shut out.

I’m remembering a time recently when I was trying to find something out from someone, and no matter how many times I tried to find it out, she gave me the same useless piece of information. (Which amounted to, “Just do what you’re told,” which was not what or why I was asking.) When I started banging my head, she started yelling, “Listen to me! Listen to me!”

And the whole time I was thinking, “I am listening to you, why the hell do you think I’m overloaded, lady? Now stop screaming at me or I won’t be able to quit hearing you long enough to stop this.” But she was utterly convinced that I was not listening, and tried numerous ways of getting in my face to ensure that I was listening, all of which ensured I had no possibility of either communicating or understanding.

Then someone walked through and asked how I was doing. I hissed — like a cat, and one of my more unmistakable sounds — and the person I’d been talking to went into patronizing-cheery mode and said “Oh, she’s doing greeeat.” Like I wasn’t even there, and hadn’t just said something, and hadn’t been banging my head moments before.

The sheer amount of people who look at me and view me as “unresponsive” when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as “response”. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as “responsiveness”. When those responses are not present, even if every other possible signal of response is happening, they view that as “unresponsiveness”. And they call us oblivious?

Like this:

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed.
I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources.
I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line).
I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness.
I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice.
I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first.
My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music.
Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few.
I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her.
As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days).
I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own.
Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love.
My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed.
You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better.
Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

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Hi
First, I appreciate your comment. But , if you allow me, I will give you another view. I hope you do not consider in a non-respectful way because it is not my intention. I will try to give you another view.
When my son begun with autism symptoms, I was totally disconcerted. I did not know how to react, how to begin interaction, how to answer him in the way he needed. When I asked for advice, to doctors the answers were awful (Autism= Cancer, Autism=Hell, “ignoring” and related). Therefore I begun my own path of discovering because for me I had to find the road because evidently nobody was providing me a clue. Yes, as you probably know, I detected a lot of medical conditions in my son and several of the behaviors were changing with a concomitant improvement in medical parameters, but however I learned to console him and to play with him and to interact with him at his own rythm and his own rules and his own needs. If he needs to jump, well, jumps. If he needs to run, runs. What I have learned is to offer alternatives of individual play (he loves PC), to find alternatives of shared interactions- he loves to hear fairy tales and so on.
What I understand is that the child is communicating, but the parents have not the advice to understand him/her or the advice they receive is to do what they do. You need a lot of personal work to learn about how to interact, and sometimes-many times- you need help to understand the sensory overload, the different feelings or sensations.
My only point: the parents (we) do in majority of cases the best we do. But many times the advice is very wrong. So for me, what we need to improve , what must change is the advice. Parents are overwhelmed and sad and dealing with a lot of emotions. The quality of the information that is received is my point. In many times, you must construct your own advice and is a development because the child changes also with time. It was for us to stunn continuously to the little evidences of communication to try to understand.
I hope you do not feel my commment as a criticism because it is not. I am explaining to you why probably some years ago I could look myself like one of the parents in the video you describe.
Thank you for understanding
MAría Luján

Thank you for another thought-provoking entry. I’m a big fan of your blog but have never posted a comment before. I think what some people call responsiveness is actually more like obedience. My son is very responsive, he often does the exact opposite of what we’ve asked :-)

I just got done veiwing the film, as I was able…my computer is so slow. A mother’s group sent it, the same that was “shocked” by the gettingthetruthout.org link I sent them. I guess it’s all in one’s perspective!

When the mother said something about her daughter screaming because she didn’t want to swing, I thought…then let her go, dang it! Oy, what do I know?

My son can be ODD. My father, wiser than I knew, often talked about “reverse psychology”…so when Ben “gets” that way, we say, “BEN, DON’T CLEAN YOUR ROOM!”, and he’ll say, “You’re doing that on purpose!” and sometimes do exactly what we want him to do, although we tell him the opposite.

Kinda makes it fun. We’ve all decided we are rather “easily amused” in this family. Easier on the heart than being devastated, and I wish I’d known that years earlier so I wouldn’t have wasted so much good time trying to change my son…

I think she’s the same one who talked about contemplating driving her car off a bridge with her daughter in it rather than put her in an “overcrowded” school with a 12:1 student/teacher ratio. (Have things changed since I went to school? When I went to school, you had to pay to get 20:1, which was considered a small class size. Many of my classes had between 30 and 60 kids.)

And she’s definitely the same one whose daughter was showing her tons of affection throughout the film, but who prompted her daughter to repeat “I love you mommy” and that’s when she started feeling like she was getting affection. (My NT staff even commented on that part.)

I just watched that “autism speaks” video, and immediately after read your response (they both appeared on our parents’support listgroup at the same time).

I feel so sorry for everyone in that video. Neither the children nor their parents are getting the right kind of help. All of them leading hard, hard lives. And why?? Because the people in charge of “mental health” and “social services” don’t understand autism. They give absolutely terrible advice, and next to no support.

Parents figure things out mostly on their own, based on the best information and advice they can get their hands on, and based on their own ideas of what parenting ought to be. Some are more talented than others at recognizing the communication they are getting from their autistic child(ren). From my vantage point watching the video I could see missed or mis-interpreted cues again, and again, and again. But I can’t blame the parents for that. They grew up NT and don’t know any other way to be. I assume that the group who made and published that video is mostly made up of parents with a similar point of view, with a similar lack of proper education.

Maybe, hopefully… one day enough “experts” will look outside of their safe professional bubbles and try to assimilate some of the knowledge and advice from experts who are living right in autism. Maybe, hopefully… parents will start get some appropriate training so that they don’t have to live at such cross-purposes with their autistic kids.

So that’s my 2 cents. I am a parent who’s been learning about autism for only 2 and a half years, the first year spent purging myself of all the frightening misinformation I received from the “service organizaton” upon my son’s diagnosis. Thank you so much for this interesting website and blog, and for your perspective.

Cheers
Sue McGowan

PS. I too have had my suicidal moments… it’s unimaginably hard to be responsible for the life and nurturing of someone you don’t share a communication system with. Really, I just want a REST! However, I’ve never thought of taking my son with me – no way. He loves life so much.

Unfortunately, while I understand the ignorance factor, I also know that this is ignorance with a lot of money and a political agenda being drive in part by that ignorance. So while I understand the source of it, I also can’t excuse it the way I could from a random private citizen leading their private life privately.

Yeah, what you said. The point of an organisation is to collect skills and knowledge and make them available for constructive use. An individual parent might be ignorant and feel overwhelmed, but the organisation should be making use of the input of the experienced and knowledgable, not seeking out the worst-case parent to represent not only all parents but all autistics.

That’s the most cynical kind of irresponsibility.

A constructive PSA could actually have an overwhelmed mom talk about how meeting with somebody who knew what they were doing actually helped and made daily life easier and happier. Ignorance and frustration certainly exist, so shouldn’t the point be to dispel them?

Well I just saw the PSA and like Amanda and I was shocked when that mom said she thought of killing herself and her autistic child and only didn’t because of what it would do to her other non-autistic child (and she said these horrible things right in front of her!)

Such a viscious cycle is at work- well meaning and desperate parents go looking for hope and someone sells it to them and in fact convinces them to highlight the worst parts of their lives with an autistic child so that they can use those images to sell hope to others-and on and on we go….How can we accept that these parents’ ignorance is being exploited-to the point where they re-mortgage their homes and have leaks running through the living room so that all their money can go to treatments? That is just unjust and unfair and worse these parents have gone so far down this road that they don’t feel they can turn back (if I run 1000 miles in the aba marathon, how can I just stop- what if the finish line is right around the corner?)

The video looked like my autistic sister’s childhood and absolutely nothing like her adulthood. I don’t disagree that it is important to highlight the challenges of raising an autistic child and the feeling of being judged and shunned by other parents is indeed valid but lets not forget that it is way more challenging for the autistic child with the nt parents- especially if the parents are reacting to their feeling of being judged and shunned by trying desperately to make their child into some fairy tale version of normal.

Hi
For many parents it is not a question of money or political agenda. I understand what you say, but also I think if more better information about autism and about how autistic children/teens and adults understand and feel the world things would be different for parents trying to connect and communicate with their children.
It is a very lonely position to try to understand autism without any useful advice ( from doctors ) and with all the best interest in your child.
Sincerely
María Luján

I have to disagree that it’s very lonely for all parents of autistic children. jypsy was never dependent totally on experts to tell her what Alex was thinking. Some parents have a way of tuning in to their children, even non-verbal ones. You can see that with Dr. Gernsbacher and her child, too. Both Drew Goldsmith (Gernsbacher’s child) and Alex Bain were/are nonverbal. My child started talking at an early age, and when xe started to flap, it wasn’t the least distressing to me. I really can’t relate to parents who pay therapists to extinguish flapping in children. Now my child does a very obvious stereotyped movment and does it frequently in any situation, it looks very strange and inexplicable… but I never dreamed of trying to stop xyr from doing it. How cruel of parents to try to force their children to be normal, to the extent of being distressed over flappy. Yes, parents can encourage their children to speak, but it’s not likely to happen with Drew, though we don’t know. He does quite well without speech, he’s in a virtual high-school at 10 years old. He’ll be doing math way over my head soon, if he isn’t already.

I am not condemning parents who need professional advice to learn how to “read” their children, I’m just saying there are parents who don’t need advice and know from the child’s birth what the child is “saying” even if it’s said in an atypical way. I haven’t seen the no doubt horrific Autism Every Day video. The EoHarm crowd are eating it up like so much pie and ice-cream, that tells me alot about the video right there. I’m sure it would be right at home on the Waters & Kraus website and playing in the courtroom of a personal injury trial. Video of happy, healthy beloved and sometimes savant or gifted autistic children will not be allowed. No, “mercury in vaccines has utterly destroyed these children… blah blah. We have every right to despise the monsters that they have become. These mercury toxic beasts have destroyed the lives of saintly parents and the beasts’ saintly normal siblings, (insert sound of distraught parent tearing his or her clothing from his or her torso).

Hi Camille
I understand what you say and perhaps the problem is how this video (That I didn´t see yet because of some connection problem) can be used and the perceptions of it. But in some way, because of what has been commented, reflects the situation and the feelings – even if I do not share them, even if I am away from there- of many parents facing the challenges of autism.
I have read Dr Gernsbacher web site and I consider very clever and fortunate for their children (hers and jipsy´s)how they could communicate the way their children needed. But for many of us has been a journey of discovering, in a middle of doctors (and other people) telling the worst things about autism and
autistics (that I found aggraviating and disguisting to say the least). Camille, you know that I respect you very much. But my experience with my son was different. Eye contact improved after a severe defficiency of vitamin A was found and treated. This is not saying that vitamin A defficiency causes autism. Vitamin A- in low doses- RDA- is the treatment for vitamin A defficiency and not more. Other behaviors were positively affected in my son after testing -careful and trustable- and adequate treatment. This did not imply to force him to have ” normal behavior” ( or the expectation of). For me it implied a part of interventions to allow him the best autistic he can be with careful analysis of benefits/risks.For example, now he uses to jump and to applaud each time he sees videos of movies (Disney movies) and he is happy. And we leave him with no intervention because we consider he is expressing himself . Even when we found some neurotranmsitter abnormalities upon testing, the risks are too much for the proposed treatment – the available one- therefore we consider that intervention is not safe.
And I assure you that our journey was very lonely and with a huge effort from our side, to research and to know as much as possible about autism and how autistic people ( teens and adults ) feel.
We learned to read our son, in a very lonely situation, this I can assure you. But also we have found a situation of a huge exchange of affection in his terms, when he wants and under his rules.
Beyond any misuse or biased analysis, we are all very related to our personal experience in our child´s autism and some way conditionated by it. I accept this and I try to have an open mind to see the overall situation, with demands of fair treatment of autistics people but also considering the lack of support many parents have and how misinformation is very abundant, because it was my situation- initially. In the same way I think neurodiversity ideas are very important, I also think that a rational approach to detect first and to treat comorbilities that can /can not being collaborating in the symptoms is possible, considering the respect for the autistic person individual (child, teen or adult) emotionally and educationally. The problem for me is the personal interpretation or perception of the overall situation and the expectations related to the detected comorbilities treatment.
I hope you understand what I am trying to say, that by no way is unrespectful to you or your ideas.
Sincerely
María Luján

This is one of the most important debates to be had in this area, so I’m glad it’s being discussed now. On the Aspies For Freedom forums there is a very frequent condemning of parents as just bad parents for the negative way they deal with their autistic children. Issues of the desperation that many parents face, and the ideologies they are presented with by the medical establishment, are ignored by this viewpoint of blame. It is true, however, that if one believes that autistic people, like many disabled people, face systematic oppression in society (and I do believe that) then parents are a node of oppression within this system, no matter how well-meaning they may be. Of course, this does not include those parents who are adopting a positive view of autism, who are in essence resisting the dominant ideology and the demands of the system. Flowing from this, I believe that it is absolutely vital that those battling for autism rights and against curing, must reach out to as many parents as possible, rather than criticise or blame them. When parents in general stop treating their autistic children as disasters, then the anti-cure perspective will be well on its way to victory.

As an autistic myself, I have gotten mixed signals and habits from various environments that seem to have confused the hell out of me. In the military, one is not supposed to look at people and they must look straight ahead. This is one environment where neurotypicals break that norm and they know that this is the environment to do it in. Because I didn’t understand a lot of the unwritten rules there however, my eye contact would get me reprimanded. ie: “stop staring at me” and “stop eyeballing me private!”. In the school environment, I had the oppposite problem from kindergarten up to third grade. It was, “John is very rude, he won’t look at you when you talk to him.” and “He won’t follow directions”. Because of my hearing, the way it is, I need to know that I’m being addressed, it doesn’t mean eye contact but I need to know the voice is being directed at me, otherwise it’s stored as mere data and fact and if it is a request, I needed a signal that is clear. The best thing was tapping the desk (not me) and then perhaps repeating my name enough times so that I’d pick it up. It required that but people want to be habitual about doing it all their normal way and won’t accomodate. I think it’s laziness on their part because I’m not so lazy that I haven’t tried to accomodate their normality. So, I didn’t know the signal in a school setting. I was ok at home with how my parents addressed me. What bothers me is that no one will give me the (pardon me) friggin’ protocol or the clear instructions of what they want before they go off and start telling others how rude I am. They might need to give me things in writing but sometimes that is so full of junk that it’s hard to see that either. So, I give up and I have picked an occupation where I can lock myself in my office or stay at home to work if needed. It’s the only way I can cope now. No one seems to be able to step outside their zone for me perhaps because of my status.

I get the feeling that people are relieved to see me in person because I’m very non-threatening at first. They think I’ll be easy to deal with, maybe even push around. Then they are afraid of me after some time.

Pardon the ramble. There is so much that this gets me going on in terms of what I could relate here.

Also, one of the first times I met an autistic who others had labelled as “severe” were surprised that if I held out my hand long enough that she would grab my hand without looking at me or my hand. I noticed she would look, and perhaps remember it was there and then direct her hand there without needing to look again. She could also catch a ball without “looking”. This also surprised some people in her family. They didn’t know perhaps that I’m now fairly used to being around autistics. They said, “She’s never done that with anyone outside the family before.”. I was a bit upset at that point that they were talking like she wasn’t there. I didn’t reply at all and just went back to playing with her. She’s the one I’ve commented on before who has a tracheotomy and the oxygen. She has a lot of medical conditions but all the same, there is nothing so unusual about “communication” because of it. I suppose some people are worried “how to do things?” or “not causing a problem”. I typically don’t think like they do or worry about the same things they do. I worry about a lot of things they don’t though.

Please realize that if you think it is “gross” for us to refer to our children with autism as “like babies”, what we mean is that they need constant supervision like a baby or toddler. My 9 year old son cannot remember to go to the bathroom because of some of the physical issues that come with autism. He has no sense of time or danger. I cannot ask him to get himself a drink because of coordination issues. I cannot ask him to dress himself without a timer and constant reminders, because he will become very distracted between his underwear and his shirt. Don’t try to tell me this is my fault, please – I have MRI’s that say differently. His brain is wired differently. His “bad” behavior in public – which we avoid at all costs – is not a result of my “bad parenting” it is a result of his neurological difficulties and simply the way his brain is wired.

This is not to say that my son is defined by his autism. Although not all children with Asperger’s Syndrome have genius level IQ’s, he is one of the 40% who do. He is working on 6th grade level math (in the 3rd grade), reads at a 6-7th grade level and loves science. He wants to be a scientist, and I see no reason why he cannot. But brushing off his difficulties and just letting him do his own thing will not work as he moves into society.

To a certain extent, he will go his own way. But it is my job for him, just as it is my job for his non-disabled sister, to prepare them for the world and for their future. If I just let him hand-flap until he hit someone, if I just isolate him in a classroom with other children with autism, if I just let the outbursts continue, if I do not teach him how to regulate his sensory issues and his emotions, I am not doing my job, and he will not end up contributing to society in the way I KNOW he can.

Fortunately, my son speaks and speaks quite well. But his semantic and pragmatic speech is way off. He cannot continue a conversation with anyone with give and take, although, with speech therapy, he has started to be able to initiate a conversation for the first time in his life. Hopefully, the coming years will bring more improvement and more nurturing of his gifts.

Laura Daigle, I like your response. I am just starting to work with autistic children as an OT assistant and I really am looking for some guidance/feedback from parents as well as professionals. I am trying to find the balance between letting the children interpret and relate to/experience the world in their own way and giving them the tools they need to function to their full potential. It seems as though you share this perspective as well. I would love to exchange emails with you to ask you more about your son and the different ways you try to accomplish this. My email is alymicfern@gmail.com if you would be so kind as to share some of your experiences with me. As it has been many years since your posting, I hope that you will still be willing to share. Thanks!!

i just watched the film and had many reactions, not all of them negative, but these were: i was disturbed by all the parents who spoke in front of their kids (not just the one about killing herself and child although that was very upsetting in particular). it shocked and saddened me that they didn’t think their kids could hear them. my son hears everything i say; he doens’t need to be stock still or staring at me to hear. the other thing that bothered me was an overall sense that these kids needed to DO such and such, an activity (like the puzzle at that particular time. why? when she said he’d do it later in seconds when he felt like it. why not let him do it when he feels like it? is doing puzzle so critical?). there was much prompting and directing and moving and manipulating of these kids without their consent. why is everyone so obsessed with EYE CONTACT? it doesn’t signify anything. i wanted the parents to slow down, to try and understand their kids and what they needed at the moment. (maybe they do most of the time. maybe we are just seeing these tiny snippets of particularly hard moments. there is no way of knowing how they are with their kids most of the time.) i wanted them to see their kids behavior as meaningful and purposeful and not dismiss it as sad or ‘tuned out’. i was mostly struck, though, with how scared the parents were. i remember feelng that way and i still struggle with stress and loneliness (but what mother doesn’t from time to time?) but i don’t feel panicked or heart broken or devastated. i wish the parents were getting more support, were feeling less frightened, were given more of what they need so they could relax and slow everything down. i guess i’m for remediation, not cure or recovery, and i guess many would take issue with me for that. but i want to give my son what he needs to grow into himself, whoever that will be, just like any other mother wants for her son–the ability to provide affectively and appropriately and lovingly for their child, for the unique individual they are. doing that for kids on the spectrum is harder than for neurotypical kids. it just is.

To Laura: I don’t think it’s your fault, I have a lot of those problems too. I was going to write about that in a separate post that never made it out. I don’t fault parents for how their kids are (well, okay unless they spoil them or something, but I don’t generally think that about parents of autistic kids), but I do have a problem with how some parents portray their children.

And to me, the “childlike” shorthand is not okay unless you’re talking about children. I need help getting to the bathroom, I have one of the crappiest senses of time I’ve ever known in someone my age, etc, and I also have brain scans that “proved” all of this to my parents. But I’m not a child, I’m 25 years old. I also don’t need the realities of autism explained to me, I’m autistic, I live with this all the time, I’m quite aware of these things because they happen to me too constantly. And that’s not at all where I have a problem with what parents are talking about.

If a 50-year-old paraplegic is incontinent, that doesn’t mean they have the “bowels of a child”, and if I function differently than other people, it doesn’t mean I have the “functioning level of a child” or the “mind of a child” (although I have plenty of tests that put my “functioning” at below the floor of tests of “functioning level” in various areas).

What I do have a problem with, is the way some parents (not all) portray their children for wide public audiences.

And no, I’m not like a baby just because I’m not like a standard-issue non-autistic adult. Wearing diapers doesn’t make a person a baby, being a certain age makes a person a baby.

Please realize that if you think it is “gross” for us to refer to our children with autism as “like babies”, what we mean is that they need constant supervision like a baby or toddler.

Laura: I don’t have a problem with saying “so-and-so needs constant supervision” or “so-and-so has trouble knowing when he has to use the bathroom” or any other discription of someone’s needs. But having different needs than other children (or adults) your age does not make you a “baby” or “childlike.”

I’m 26 years old. I get easily lost in places that are not my house (because of a spatial disability), and need an assistant to leave the house. Some of those assistants have been children who are much younger than I am. That does not make me a child.

I’ve had imaginary friends for long past the age when most people give them up. That may be something more associated with children than adults, but that doesn’t make me a child.

My uncle has multiple sclerosis; he doesn’t speak, uses a wheelchair and is incontinent. Those things don’t make him a child.

I don’t think the difficulties or needs disabled people have are gross, or anyone’s fault. I certainly don’t think describing those needs is wrong. But those needs can be described without saying someone is like a child or a baby.

There’s a good anecdote illustrating this principle about “responsiveness”:
There was this study (dunno the exact date or details), where they were testing whether people would “talk to machines” — such as voicemail and suchlike. Evidently, people were very freaked out when the machines were just silent…but when the researchers programmed the speech-synths to emit semi-random, non-verbal noises (“A-haaaaah!” etc.), the people became far more receptive to “talking to the machines”…..sorry if I don’t provide much detail here, but it’s anecdotal, as I said, but you could probaly do a google search if you can figure out what to search for. (Sorry I don’t remember it more solidly.)

If this study actually happened, I find it rather sad, in that it really gives creedence to that godawful presumption that most of ‘communication’ consists essentially of grunts, groans and grimaces (“body language” and nonverbal noises), and only a small amount of it is actually intellectual, in the sense of carrying coherent ‘meaning.’). This terrifies me for some reason….probably because the idea of having nuclear weapons run by people who react more to “how you say it” than to “what you say” is…..damn frightening, actually.

This post reminds me of a story I once read in some trashy women’s magazine; the story was sent in by a woman whose husband was diagnosed with Asperger’s sometime after they got married and she was relating how she “taught” her husband to “be more romantic” and to “give her regular compliments”. If I remember correctly, she set up a card index file with a “compliment” written on each card, such as “I love stroking your hair, it feels all soft and silky”, “you have the most gorgeous emerald green eyes, I love looking into them”(!), or whatever. And she’d regulary pull out a handful of these cards and tell her husband to choose one, and then he’d have to recite whatever she’d written on it like a bloody script or something. I think she even had a system of “rewards” to encourage him to polish his performance. If MY partner tried to put some crap like this onto me (he’s not at all likely to, ‘cos I’ve been lucky enough to meet someone who loves me just the way I am) my response would be something like: “I’ll put on a silly little paper hat and jump through a hoop for you, if you like!” – I certainly hope that that woman’s husband has, by now, had the sense to divorce her and that he’s met a female version of my Andrew.
I don’t understand this obsession with eye contact, either. As Andrew has pointed out to me when I told him about an incident when a Buddhist leader was patronizing and verbally aggressive to me about my lack of eye contact when shaking hands with the UK general director of Soka Gakkai (a lay organisation of those who practice Nichiren Buddhism), in some cultures it is considered very rude to look someone directely in the eyes.